Citizen event reporting (CER) attempts to leverage the eyes and ears of a large population of citizen sensors to increase the amount of information available to decision makers. When deployed in an environment that includes hostile elements, foes can exploit the system to exert indirect control over the response infrastructure. We use an agent-based model to relate the utility of responses to population composition, citizen behavior, and decision strategy, and measure the result in terms of a force (...) multiplier. We show that CER can lead to positive force multipliers even with a majority of hostile elements in the population. When reporter identity is known, a reputation system that keeps track of trustworthy reporters can further increase the force multipliers. (shrink)

Islamic values are among the topics that are considered by people in an Islamic society in human and organisational life and paying attention to them can have positive consequences for the individual and the organisation. The purpose of this study is to investigate the effect of Islamic values on citizenship behaviours of Muslim citizens. The research is applied in terms of purpose and descriptive-survey in terms of nature and method. The statistical population of this research includes 2600 Muslim employees of (...) 45 manufacturing Indonesian organisations in 2021. The sample size was estimated to be 335 by simple random sampling. The data collection tool of this study is a questionnaire. The validity of questionnaire was confirmed by confirmatory factor analysis and reliability by Cronbach's alpha coefficient; further, data analysis was performed using linear structural relationships (LISREL) software. The results of structural equations modeling showed that Islamic values have a positive and significant effect on citizenship behaviours of Muslim citizens (p = 0.78; T-Value= 8.62). CONTRIBUTION: The results showed that paying attention to Islamic values in the organisation contributes to citizenship behaviours of people. Therefore, it is suggested that Islamic values be the basis of staff activities and employees who are more committed to these values in the organisation should be encouraged by the management of organisations. (shrink)

Islamic values are among the topics that are considered by people in an Islamic society in human and organisational life and paying attention to them can have positive consequences for the individual and the organisation. The purpose of this study is to investigate the effect of Islamic values on citizenship behaviours of Muslim citizens. The research is applied in terms of purpose and descriptive-survey in terms of nature and method. The statistical population of this research includes 2600 Muslim employees of (...) 45 manufacturing Indonesian organisations in 2021. The sample size was estimated to be 335 by simple random sampling. The data collection tool of this study is a questionnaire. The validity of questionnaire was confirmed by confirmatory factor analysis and reliability by Cronbach's alpha coefficient; further, data analysis was performed using linear structural relationships (LISREL) software. The results of structural equations modeling showed that Islamic values have a positive and significant effect on citizenship behaviours of Muslim citizens (p = 0.78; T-Value= 8.62). CONTRIBUTION: The results showed that paying attention to Islamic values in the organisation contributes to citizenship behaviours of people. Therefore, it is suggested that Islamic values be the basis of staff activities and employees who are more committed to these values in the organisation should be encouraged by the management of organisations. (shrink)

Citizen Inquiry: Synthesising Science and Inquiry Learning is the first book of its kind to bring together the concepts of citizen science and inquiry-based learning to illustrate the pedagogical advantages of this approach. It shifts the emphasis of scientific investigations from scientists to the general public, by educating learners of all ages to determine their own research agenda and devise their own investigations underpinned by a model of scientific inquiry. 'Citizen Inquiry' is an original approach (...) to research education that refers to mass participation of the public in joining inquiry-led scientific investigations. Using a range of practical case studies underpinned by the theory of inquiry-based learning, this book has significant implications for teaching and learning through exploration of how new technologies can be used to engage with scientific research. Key features include: a new perspective on science education and science practice through crowd-sourced research explanation of the benefits of this innovative approach to teaching and learning a steady shift of emphasis from theory to application for readers to thoroughly understand the current state of research in the field and its applications to practice examples of practical applications of this approach and recommendations on how successful citizen inquiry applications can be developed This edited volume is essential reading for academic researchers and professional educators interested in the potential of online technology in all levels of education, from primary and secondary level through to further education and lifelong learning. It will be ideal reading on any undergraduate or postgraduate course involving Research Methods in education as well as developments in science education and educational software. (shrink)

. Given the importance of the issue of scientific objectivity in our democratic societies and the significant development of citizen science, it is crucial to investigate how citizen science may either undermine or foster scientific objectivity. This paper identifies a variety of epistemic risks and benefits that participation of lay citizens in scientific inquiries may bring. It also discusses concrete actions and pending issues that should be addressed in order to foster objectivity in citizen science programs.

Citizen science (CS) has been presented as a novel form of research relevant for social concerns and global challenges. CS transforms the roles of participants to being actively involved at various stages of research processes, CS projects are dynamic, and pluralism arises when many non-professional researchers take an active involvement in research. Some argue that these elements all make existing research ethical principles and regulations ill-suited for guiding responsible CS conduct. However, while many have sought to highlight such challenges (...) from CS, few have discussed principles per se providing the foundation for regulations. In this article we will investigate the possibilities of midlevel principlism in guiding responsible CS conduct. Principlism has the potential of accommodating many of the concerns taken to reduce the relevance of existing principles. (shrink)

James Wynn’s timely investigation highlights scientific studies grounded in publicly gathered data and probes the rhetoric these studies employ. Many of these endeavors, such as the widely used SETI@home project, simply draw on the processing power of participants’ home computers; others, like the protein-folding game FoldIt, ask users to take a more active role in solving scientific problems. In Citizen Science in the Digital Age: Rhetoric, Science, and Public Engagement, Wynn analyzes the discourse that enables these scientific ventures, as (...) well as the difficulties that arise in communication between scientists and lay people and the potential for misuse of publicly gathered data. (shrink)

Attitudes toward robots influence the tendency to accept or reject robotic devices. Thus it is important to investigate whether and how attitudes toward robots can change. In this pilot study we investigate attitudinal changes in elderly citizens toward a tele-operated robot in relation to three parameters: (i) the information provided about robot functionality, (ii) the number of encounters, (iii) personality type. Fourteen elderly residents at a rehabilitation center participated. Pre-encounter attitudes toward robots, anthropomorphic thinking, and personality were assessed. Thereafter the (...) participants interacted with a tele-operated robot (Telenoid) during their lunch (c. 30 min.) for up to 3 days. Half of the participants were informed that the robot was tele-operated (IC) whilst the other half were naïve to its functioning (UC). Post-encounter assessments of attitudes toward robots and anthropomorphic thinking were undertaken to assess change. Attitudes toward robots were assessed with a new generic 35-items questionnaire (attitudes toward social robots scale: ASOR-5), offering a differentiated conceptualization of the conditions for social interaction. There was no significant difference between the IC and UC groups in attitude change toward robots though trends were observed. Personality was correlated with some tendencies for attitude changes; Extraversion correlated with positive attitude changes to intimate-personal relatedness with the robot (r = 0.619) and to psychological relatedness (r = 0.581) whilst Neuroticism correlated negatively (r = -0.582) with mental relatedness with the robot. The results tentatively suggest that neither information about functionality nor direct repeated encounters are pivotal in changing attitudes toward robots in elderly citizens. This may reflect a cognitive congruence bias where the robot is experienced in congruence with initial attitudes, or it may support action-based explanations of cognitive dissonance reductions, given that robots, unlike computers, are not yet perceived as action targets. Specific personality traits may be indicators of attitude change relating to specific domains of social interaction. Implications and future directions are discussed. (shrink)

Abstract:This paper investigates whether, in theoretical terms, corporations can be citizens. The argument is based on the observation that the debate on “corporate citizenship” (CC) has only paid limited attention to the actual notion of citizenship. Where it has been discussed, authors have either largely left the concept of CC unquestioned, or applied rather unidimensional and decontextualized notions of citizenship to the corporate sphere. The paper opens with a critical discussion of a major contribution to the CC literature, the work (...) of Logsdon and Wood (Wood and Logsdon 2001; Logsdon and Wood 2002). It continues with a consideration of the nature and role of metaphors for business and of the contestable nature of the political concept of citizenship. It evaluates corporations as citizens through a four-dimensional framework of democratic citizenship offered by Stokes (2002). The analysis suggests that corporations do not easily fit the “liberal minimalist” model of citizenship. It finds, however some possibilities for fit with the three more participatory models. The paper concludes by cautioning against basing corporate citizenship on legal and administrative status or identity, and mapping out specific criteria by which we might determine whether corporations could be considered as citizens by virtue of their participation in processes of governance. (shrink)

Can we hold citizens causally responsible for the outcomes of their voting decisions? They could stand in the causal relationship required for such responsibility either collectively or individually. Recent accounts ascribing responsibility to citizens have primarily taken the collective route because of a major obstacle to using an individualistic approach, namely, the problem of overdetermination: the actions of each citizen do not make an individual difference to, and therefore cannot be a cause of, the overall political outcome. I suggest, (...) drawing on Parfit (1984) and Wright (1985), that we should allow for the idea that individuals can be causally responsible in virtue of making a difference to an outcome not only as an individual, but also as part of a set of agents. I conclude that we therefore can overcome the problem of overdetermination for the individualistic approach and that it merits further investigation. (shrink)

Societally salient issues, like migration, stimulate user engagement with political parties on social media. This user engagement, in turn, is associated with political behavior, such as voting. Nonetheless, few studies so far have investigated the interaction between these factors. We examine how anti-immigration attitudes are associated with user engagement with political parties on social media. In this study, user engagement is understood as following political parties on social media. Through online data that were collected in October 2019 among adults (N= (...) 1,000) in Belgium, we investigate how attitudes and user engagement are associated with voting behavior. Results suggest that attitudes towards migration are associated with user engagement with both left and right-wing parties on social media. Moreover, these attitudes and user engagement – and the interaction between the two – are related to voting behavior: being against (being in favor of) migration and following right-wing (left-wing) parties on social media is associated with a higher likelihood of voting for a right-wing (left-wing) party. (shrink)

This paper advances the research on personalization of political communication by investigating whether this process of focusing on politicians instead of political issues plays a role on Twitter. Results of a content analysis of 5,530 tweets posted in the run-up to the German federal election provide evidence that Twitter communication refers more often to politicians than to issues. However, tweets containing personal characteristics about political leaders play only a marginal role. When distinguishing among different groups of actors on Twitter (journalists, (...) politicians, citizens), we find that citizens focus more on candidates than do journalists or politicians. Investigating the impact of a televised debate on Twitter communication, we observe that this person-centered event puts the focus on individual politicians instead of issues. (shrink)

This article aims at shedding light on how civic engagement matters for the emergence of a European public sphere. It investigates the citizen's role in constituting it and asks how citizens, being located in different cultural and political contexts, participate in and appropriate EU political communication. First, the article develops a pragmatic approach to the European public sphere emphasizing the importance of citizens' communicative participation and, moreover, considers the transnational and transcultural character of European political communication. It is assumed (...) that the constitution of public spheres – representing social constructions fulfilling democratic functions – ultimately relies on the citizen audience's perception of the impact of common problems and the EU's political decisions as well as on their subsequent participation in public discourses. The second part of the article presents the findings of empirical case studies conducted in France, Italy and Germany to explore citizens' engagement in and appropriation of the European constitutional debate. (shrink)

There is resistance to policies that would reduce overall consumption levels to promote sustainability. In part, this resistance is aided by the economic concept of consumer sovereignty (CS) and its presumption that choice promotes wellbeing. We investigate the concept of consumer sovereignty in the context of deepening concerns about sustainability and scrutinise whether the two concepts are compatible. We draw on new findings in psychology on human decision-making traits; we take into account increasing awareness about human dependencies on 'functioning' ecosystems (...) and uncertainties on how ecosystems, human activities and human wellbeing are interlinked. We conclude that commitment to the concept of consumer sovereignty is incompatible with sustainability due to human characteristics, the difficult-to-predict behaviour of ecological systems and ignorance about the impact of human action on natural systems. We propose that the choice-set of available goods and services on markets should be constrained when consumption patterns can be linked to degradation of services provided by nature when those services are seen as crucial for human wellbeing. We advocate constraining the available choice-set through established governmental institutions aided by deliberative processes that engage members of the general public. Finally, we acknowledge that such processes are imperfect; nevertheless, we foresee that they will be essential for fostering wise decision-making and moving towards sustainability. (shrink)

Ethical consumer discourse is organized around the idea that shopping, and particularly food shopping, is a way to create progressive social change. A key component of this discourse is the “citizen-consumer” hybrid, found in both activist and academic writing on ethical consumption. The hybrid concept implies a social practice – “voting with your dollar” – that can satisfy competing ideologies of consumerism (an idea rooted in individual self-interest) and citizenship (an ideal rooted in collective responsibility to a social and (...) ecological commons). While a hopeful sign, this hybrid concept needs to be theoretically unpacked, and empirically explored. This article has two purposes. First, it is a theory-building project that unpacks the citizen-consumer concept, and investigates underlying ideological tensions and contradictions. The second purpose of the paper is to relate theory to an empirical case-study of the citizen-consumer in practice. Using the case-study of Whole Foods Market (WFM), a corporation frequently touted as an ethical market actor, I ask: (1) how does WFM frame the citizen-consumer hybrid, and (2) what ideological tensions between consumer and citizen ideals are present in the framing? Are both ideals coexisting and balanced in the citizen-consumer hybrid, or is this construct used to disguise underlying ideological inconsistencies? Rather than meeting the requirements of consumerism and citizenship equally, the case of WFM suggests that the citizen-consumer hybrid provides superficial attention to citizenship goals in order to serve three consumerist interests better: consumer choice, status distinction, and ecological cornucopianism. I argue that a true “citizen-consumer” hybrid is not only difficult to achieve, but may be internally inconsistent in a growth-oriented corporate setting. (shrink)

Citizen identification systems (known also as ‘ID card systems’, or ‘national identity management systems’, even though those definitions are not identical) are receiving a mixed acceptance, with their privacy, security and usability being criticised, specifically in the UK. This paper investigates whether it is possible to improve social acceptance of such systems in cases where they are incompatible with the perceived value of privacy, but without significantly changing their original architecture. The paper analyses requirements using four different scenarios that (...) address long-term privacy issues. Relatively small alterations to such systems are suggested that may significantly improve their adoption. (shrink)

In this article we investigate the value and utility of Machiavelli’s work for Community-Based Natural Resource Management. We made a selection of five topics derived from literature on NRM and CBNRM: Law and Policy, Justice, Participation, Transparency, and Leadership and management. We use Machiavelli’s work to analyze these topics and embed the results in a narrative intended to lead into the final conclusions, where the overarching theme of natural resource management for the common good is considered. Machiavelli’s focus on practical (...) realities produces new, sometimes unsettling, insights. We conclude that this focus helps to understand the development and performance of management regimes and their consequences and that institutional design should be seen as an ongoing process, which requires a constant adaptation of these institutions. (shrink)

ABSTRACT The media's attentive vigil over America's most militant and outrageous activists in the abortion wars has obscured a massive but quiet effort on the part of evangelicals to engage their opponents in exemplary deliberative discussions about bioethics. For a variety of reasons, activists in the pro‐life movement are more committed to carving out civic spaces for such dialogue than are their pro‐choice counterparts. This discrepancy invites investigation into the forces that promote and constrain political movements' interest in deliberation, as (...) well as highlighting the undeniable limits to deliberative ideals. (shrink)

Purpose This study aims to investigate and comprehend the key factors that affect citizens’ adoption of electronic government (e-government) in Nigeria. In addition, the exploration intends to assess the potential determinants that may affect the Nigerian’s behavioural intention (BI) to adopt e-government services. The findings can be helpful for policymakers and government officials to provide e-government practices effectively. Design/methodology/approach The research adopted a quantitative method using the unified model of e-government adoption (UMEGA). In this study, data are collected from 410 (...) citizens aged above 18 years old and analysed using partial least squares path modelling technique. Findings The results showed that performance expectancy and effort expectancy positively influenced attitude (ATT) towards e-government. In contrast, perceived risk negatively impacted ATT towards e-government. However, social influence did not have a significant influence. The results showed that ATT and facilitating conditions (FC) positively influenced the BI to use e-government services. The explanatory and predictive power of UMEGA in Nigeria accounted for 63.9%. Originality/value To the authors’ knowledge, no prior studies analysed citizens’ adoption of e-government in Nigeria. This study, however, filled this gap. This study has contributed to the current knowledge of e-government adoption in Nigeria, which policymakers and government officials can use. (shrink)

Lifestyles are evidence for the influence of systems, cultures and civilisations within various societies. In view of that, all systems of thought aim to maintain certain ways of living in citizens to implement their ideals. Furthermore, if societies do not accept the lifestyles introduced by such systems, their intellectual foundations and values are rejected. In this regard, the Islamic lifestyle does not imply giving up all pleasures and blessings, but it takes on a divine colour to all pleasures. The objective (...) of this study was to investigate the relationship between religious lifestyle and social health among 1000 Muslim teachers working in Kuala Lumpur, Malaysia, over a period of six months, in 2020-21. Utilising the simple random sampling method, 278 teachers were thus selected as the statistical sample and then completed some questionnaires on Islamic lifestyle and social health. Data analysis was also performed using the structural equation modeling (SEM) in the Linear Structural Relations (LISREL) statistical software package. The results demonstrated a significant positive correlation between Islamic lifestyle and social health (p = 0.58, t = 6.84). CONTRIBUTION: The study results showed the importance of Islamic lifestyle in improving teachers' social health. (shrink)

This study seeks to understand how citizens’ more intrinsic cultural orientations shape their attitudes toward the importance of ethics. Drawing upon the Grid-Group Cultural Theory, we investigate how four different cultural orientations influence citizens’ attitudes toward ethics in distinctive ways. Our multivariate analysis of the survey responses of 1,260 Seoul citizens revealed that strong hierarchs, egalitarians, and individualists are more likely to recognize the importance and necessity of public ethics. Fatalist orientation, however, did not show a statistically significant relationship with (...) the importance and necessity of public ethics. It was individualism that exerted the most significant influence over the importance of ethics in personal life, while the perception of the importance of ethics in the public sector and the necessity for ethics training for public officials were found to be mostly supported by strong hierarchs. We conclude this paper by discussing the theoretical and practical ramifications of these findings. (shrink)

Purpose We examine the levels of post-trial responsibility ascribed to different stakeholders, following a community-based clinical trial and how the ‘responsibility’ is understood. Methods We employed photovoice, unstructured observations and key informant interviews to gain insights into contexts of access to care following transition to the public health system post trial. We used an inductive narrative analysis to explore experiences and understandings of post-trial access. Results In their photovoice stories, many participants expressed a sense of abandonment after the trial. This (...) was viewed as a contributing factor to failing to re-engage with care available in the public health system. This led to the experiences of loss as some trial participants defaulted and died. Research investigators, department of health participants and sponsor agreed that PTA was especially important for communities in resource-limited settings. The government has an obligation towards its citizens while researchers have a responsibility to ensure a smooth transition of patients to public clinics. Sponsors have a responsibility to ensure that the trial is conducted in accordance with the protocol and post-trial agreements are in place and adhered to. Research partnerships among stakeholders were affected by power imbalances making it difficult to negotiate and plan for post-trial care responsibilities. Conclusions The research community still struggles with understanding the scope of PTA responsibilities. Power dynamics between public health actors and research sponsors need to be managed to ensure that government involvement is not tokenistic. The responsibility of trial participants and ethics committees needs to be investigated further. Data are available upon request. (shrink)

By exploring the meaning construction of Chinese citizenship stipulated in Chinese legislation and its interaction with social identities and human nature in the Chinese society, the present study investigates the nature and evolution of the conception of Chinese citizens through three selected cases from Chinese legislations, which illuminate that Chinese citizens are essentially persons with independent personalities defined by the rights and obligations stipulated in legislation. This conception is further strengthened by the entitlement to private properties and equality before law. (...) This conception of Chinese citizenship is concrete and meaningful in the sense that it is underpinned with reference to social identities as person, people and personality in Chinese legislations. The reference of the conception to human being constitutes the essence of Chinese legislation. The meaning construction of Chinese citizenship is indeed a dynamic process engineered in the social and cultural process. The findings on the evolution of the construction of Chinese citizenship in Chinese legislation suggest that the formation of legal identity through legislation varies greatly in different countries. Nevertheless, the realization of the conception of citizenship will necessarily be backed up by social identities as person, people and personality, which will be further strengthened and expanded by the legitimating of private properties and equality before law. Citizenship is achieved by social participants through mediation engineered within the social and cultural process. (shrink)

Justice has a high status in Islamic societies, and as one of the most important human ideals, has long been the focus of thinkers and researchers. In fact, when the citizens do not understand the presence of justice in the behaviour of the officials of their society, their trust in the current procedures, and consequently the public participation will be affected. Considering the importance of the subject, the present study has been conducted with the aim of investigating the effect of (...) perception of justice on citizens’ trust and participation in the creation of a democratic Islamic society. The statistical population of this research included 3578 Indonesian Muslim citizens in 2022, and the research questionnaires were distributed among them. Data analyses were done using Statistical Package for the Social Sciences (SPSS) and Linear Structural Relations (LISREL) statistical software. The results of statistical analyses indicated that the perception of Islamic justice does not have a significant effect on the participation of Muslims in creating a democratic Islamic society. In addition, the perception of Islamic justice has a positive effect on the trust in officials of the Islamic society. Moreover, trust in the officials of the Islamic society positively affects the citizens’ participation in creating a democratic Islamic society.Contribution: According to the results of this research, it is necessary for the officials of the Islamic society to use all their efforts in creating a justice-oriented Islamic society in order to create trust among the citizens, and to involve Muslims in development decisions and to establish democratic Islamic society. (shrink)

In Britain, substantial cuts in police budgets alongside controversial handling of incidents such as politically sensitive enquiries, public disorder and relations with the media have recently triggered much debate about public knowledge and trust in the police. To date, however, little academic research has investigated how knowledge of police performance impacts citizens’ trust. We address this long-standing lacuna by exploring citizens’ trust before and after exposure to real performance data in the context of a British police force. The results reveal (...) that being informed of performance data affects citizens’ trust significantly. Furthermore, direction and degree of change in trust are related to variations across the different elements of the reported performance criteria. Interestingly, the volatility of citizens’ trust is related to initial performance perceptions, and citizens’ intentions to support the police do not always correlate with their cognitive and affective trust towards the police. In discussing our findings, we explore the implications of how being transparent with performance data can both hinder and be helpful in developing citizens’ trust towards a public organisation such as the police. From our study, we pose a number of ethical challenges that practitioners face when deciding what data to highlight, to whom, and for what purpose. (shrink)

Purpose New media is reshaping mediated communication. This paper aims to examine whether the online community is concerned about ethical issues in citizen journalism. Design/methodology/approach The study uses critical thematic analyses to examine 1,402 comments posted in response to two YouTube videos of teenage girl molestation in India. This method was appropriate, as it will show how public reacts to information disseminated by common citizens and also show whether ethics are related to citizen journalism. Findings Results show that (...) although some viewers questioned the cameraperson’s and the passerby’s morality, several supportive comments praised the cameraperson’s presence of mind and courage. Furthermore, it shows that while some viewers vilified the victim, others advocated a more prudent response. This shows ambiguity regarding ethics in cyberspace. The mixed reactions present strong evidence to challenge the idealistic and exceedingly rational original notion of the public sphere as homogenous or integrated on issues of public concern. Instead, result exhibits an emergence of pluralistic, intersecting and contending publics that are created by new communication technologies like the internet. Research limitations/implications The study was specific to a particular context thereby lacking generalizability. However, it implies further investigation of social agency and the underlying politics in the move from local to global. Originality/value These findings necessitate a reconceptualization of cyberspace ethics to accommodate the new publics that have materialized from new media technologies. (shrink)

Hegel's account of freedom is complex and difficult. It integrates a doctrine of free agency, a theory of social freedom, and a self-determining theodicy of Spirit. To achieve full understanding, if full understanding is possible, the student must both disentangle and articulate the components, and then fit together the separate pieces into an intelligible whole. And what is true of the whole is true of the parts; each element is in turn complex and controversial.In this paper, I want to investigate (...) one very small aspect of this picture — the political phenomenology of the citizen of Hegel's rational state. Whether we are delineating the contours of free agency or re-telling Hegel's story about the modes of freedom constitutive of the institutions of the modern state, sooner or later we shall have to interpret Hegel's description of the self-consciousness of the typical citizen. We shall have to give some account of what citizens take to be their political standing, and show how both this standing and the citizens' understanding of it contribute to freedom.This should not be a controversial claim. To paraphrase portions of the famous statement at PR §260: The state is the actuality of concrete freedom. Members of families integrated into civil society knowingly and willingly acknowledge their citizenship and actively pursue the ends of the state. They do not live as private persons merely; in understanding, endorsing and acting out their ethical status as citizens they achieve such subjective fulfilment as isnecessaryfor them to be truly free. (shrink)

The strong correlation between people’s socioeconomic position and health within high income countries is a well-documented fact. A person’s occupation, income and education level tell us a lot about that person’s prospects on a long and healthy life, such that we can speak of a ‘social gradient in health’, or a ‘socioeconomic health gap’. This association is often perceived to be unjust. Therefore, it is generally thought that governments should aim to reduce socioeconomic health inequalities. However, this idea needs ethical (...) justification, for it is not evident if and why exactly these inequalities are unjust. For instance, are inequalities in health unjust per se? Or because the underlying socioeconomic inequalities are unjust? And does justice require equal health levels, or a minimum level of health? What complicates the issue, is that the width of the health gap, or the steepness of the social gradient, depends on what health measures are used. Overall, the more subjective the measure, the greater the inequalities appear to be. But are all these measures equally morally relevant? This dissertation aims to give a better understanding of these philosophical questions. It does so by investigating the question of what we should understand by health in the first part, after which it addresses the question of how to evaluate socioeconomic health inequalities in the light of justice. The introduction begins with a description of the phenomenon of socioeconomic health inequalities, and how it has been addressed by politicians, epidemiologists and philosophers in the past and today. The chapter continues by formulating the central question of the dissertation – that of which health inequalities should be focused in the light of a concern with social justice. It explicates how this dissertation contributes to answering that question, by discussing the potential relation between the conceptualisation of health and justice evaluations, and by discussing which questions are addressed in each of the following chapters. The chapter 2 addresses the question of how health is conceptualised in the philosophical and public heath literature, and how theoretical concepts of health differ. It proposes to approach health concepts as a Wittgensteinian family of thick concepts and argues that while theories on health generally argue in favour of one specific concept, a comparison of concepts shows that we may need different concepts of health given the variety of health practices. By explicating the differences between five concepts of health, this chapter argues that each captures aspects of health that all seem relevant when we talk and think about health. Classifying these concepts based on their distinctions reveals them as members of a conceptual family: each of the discussed concepts differs from the others in at least one respect and resembles the others in several respects. Moreover, the discussion of the concepts shows that ‘health’ always both describes a condition and values that condition at the same time. Having both descriptive and evaluative dimensions, we can see health concepts as ‘thick concepts’. Given this evaluative dimension, it is important to reflect on the question of what understanding of health guides specific practices. Moreover, the distinctions revealed by the classification can serve as a conceptual toolbox for reflection on the assumptions and purposes of health practices. How such reflection could work is illustrated by a brief exploration of what health aspects are focused upon in three specific health practices. Chapter 3 presents a study into the question of how health is conceptualised by ordinary citizens and to what extent conceptualisations of health differ between socioeconomic groups. By making use of the method of concept mapping, this study analyses how different socioeconomic groups formulate their own answers regarding the question ‘what does health mean to you?’. It presents concept maps of health for three different socioeconomic groups living in the city of Utrecht that reveal that all groups have a multidimensional understanding of health. An interpretation of the concept maps reveals nuanced differences between groups. The multiple aspects of health were also ranked by importance. It appears that each group assigned most importance to mental health. All in all, the study shows that people in lower socioeconomic groups are more likely to show a conceptualisation of health that refers to 1) the absence of health threats, 2) a person within his/her circumstances, 3) the value of functional notions, and 4) an accepting attitude towards life. Chapter 4 addresses the question of what the theoretical and empirical study to concepts of health could imply for health equity practices. It does so by exploring further the suggestions made in chapters 2 and 3. Regarding the question of which health aspects should guide health equity policies, this chapter discusses the question of whether we should primarily look at subjective or objective health measures, and whether a universal or relative standard of health should be central. While justice-related concerns of impartiality and equal treatment may seem to favour an objective perspective and a universal health standard, it appears that we have good reason to account for the subjective perspective as well. It is also argued that a concern for recognition and participatory parity gives room for relative health standards. Th room for relative health standards confronts us with the question of how to deal with mechanisms like adaptive preferences that the concept maps reveal. It proposes a way out, by arguing for society-relative health standards. Chapter 5 examines the question of whether inequalities in health should be evaluated ‘directly’, thus independently of a distribution of their social determinants. It proposes a sufficientarian perspective, such that the central question of evaluation is that of whether everyone is – or can be – healthy enough. By discussing two sufficientarian approaches to health and social justice – by Powers & Faden and by Nussbaum – this chapter distinguishes two ways of setting a threshold level for health. Both approaches appear to provide an unsatisfactory basis for justice evaluations and lead us away from direct evaluation if we try to settle health minima that are less arbitrary. In anticipation to chapters 6 and 7, it is argued that the perspective of sufficient health for relational equality escapes this arbitrariness: compared to that of a decent human life, it better helps to answer both the question of what socioeconomic health inequalities a society is due to avoid, and the question of when socioeconomic health inequalities are unjust considering their consequences. Chapter 6 discusses to what extent Daniels’s theory of health justice provides a satisfactory answer to the question of what health inequalities a society is due to avoid. Daniels proposes an indirect evaluative approach by arguing that we should evaluate socioeconomic health inequalities in the light of Rawls’s principles of justice as fairness. That is, if socioeconomic inequalities are in accordance with fair equality of opportunity and with the difference principle, the corresponding health inequalities would be just. It is shown that the suggestion that Rawls’s principles regulate the social determinants of health neglects that not all social determinants of health belong to society’s basic structure as conceived of by Rawls and are thereby not subjected to the principles of justice. To acknowledge the social mechanisms leading to socioeconomic health inequalities in their full complexity, it is argued that we should broaden our understanding of society’s structure in accordance with Young’s notion of social structural processes. This renders the question of what health inequalities a society is due to avoid into a question of what we can expect from the side of the various actors that uphold the social structures that produce socioeconomic health inequalities. Lastly, it is discussed how a shift to Young’s theory completes the shift to non-ideal theorising that seem already initiated by Daniels, and that with this, the distinction between direct and indirect evaluation dissolves. Chapter 7 discusses to what extent equality in health is of instrumental value for a society of free and equals. It thus takes up the idea proposed in chapter 5, that an evaluation of the consequences of health inequalities is also due. Taking relational equality as an evaluative framework reveals three ways in which inequalities in life expectancy threaten this ideal. That is, via unequal risks to stigmatisation, unequal risks to unemployment and the risk of unequal pension enjoyments. It is thereby shown that these risks are especially great for those lower down the socioeconomic strata. It thus concludes that equality in health is of instrumental value to relational equality. The chapter continues to argue that our instrumental approach opens a new perspective: to mitigate the identified injustices by changing society, rather than by reducing inequalities in health. This is argued to be an advantage in the light of the realistic assumption that of the socioeconomic health inequalities will persist. The paper thus offers a complementary approach to both the evaluation and the mitigation of the injustice of socioeconomic inequalities in health. The discussion chapter summarises the central findings of the analyses of health concepts and discusses questions regarding the philosophical and practical merits of comparing theoretical health concepts, the need for developing new health measures or concepts and the importance or nonsense of studying citizen’s views on health. Repeating this for the dissertation’s second part, the central findings of the chapters on justice evaluation are summarised and followed by a discussion of questions and issues that have remained unaddressed so far. Here, central points of discussion are my take on rules of distribution, the distinction of direct and indirect evaluation, the role of ideal and non-ideal theory, the idea of relational equality, and personal responsibility for health. The chapter concludes by noting that also in the light of justice evaluations, all commonly used health measures are relevant for justice. Therefore, my recommendations for policy and further research entail that inequalities in each of these measures deserve attention by both policymakers and researchers. Specifically, policymakers and researchers should give attention to how exactly each of these health inequalities come about, in such a way that a discussion about the question of who can be assigned responsibility to alleviate them is well-informed; and both should give attention to the effects of health inequalities on the opportunities for people to live on equal standing, in such a way that when these opportunities are diminished, actions can be considered to aim to restore relational equality. (shrink)

In this thesis I develop a model of the citizen which offers a resolution to the tension between the individual and society. This is done in two interconnected parts. In the first part of the thesis I establish the form of the citizen through a comparative analysis of the manifestation of the tension between the individual and society in the politicoeducational projects of Rousseau, Dewey and Freire in conversation with contemporary debates on the citizen. I identify the (...) impact and influence that Rousseau, Dewey and Freire have had on the contemporary debate, address their shortcomings through critical comparison and strengthen that conception within the context of the contemporary citizen. The conclusion is a citizen that is defined and discovered by the subjects that seek to embody its values. It is a bottom-up model that I call the Critical Citizen. In the second part of the thesis I investigate what model of education is suited for the development of the Critical Citizen and the political conditions necessary for its realisation. I offer an interactional and an institutional response to this investigation which addresses the relationships between members of a school as well as the relationship between the school and society. Both responses are developed through an analysis of authority as an instantiation of the tension between the individual and society, and of democratic education as a potential resolution to the problem of authority. I conclude my investigation with two radical recommendations, the first interactional and the second institutional, which is informed by the politico-educational projects of Rousseau, Dewey and Freire and the methodology which underpins their practice. I argue in favour of the large-scale incorporation of internally democratic schooling in schools in the UK and the federated disestablishment of education and state in order to protect the individuals subject to education from the coercive force of the state and of the free market. (shrink)

In 1970, Stewart advocated disenfranchising everyone reaching retirement age or age 70, whichever was earlier. The question of whether senior citizens should be disenfranchised has recently come to the fore due to votes on issues such as Brexit and climate change. Indeed, there is a growing literature which argues that we should increase the voting power of non-senior citizens relative to senior citizens, for reasons having to do with intergenerational justice. Thus, it seems that there are reasons of justice to (...) disenfranchise senior citizens, or at least to grant them a lower voting weight than non-senior citizens. In this paper, we investigate whether there are democratic reasons to do so. To answer this question, we turn to the boundary problem in democratic theory, i.e., the question of who should be included in democratic decision-making. Two prominent solutions, and a more recent one, are particularly relevant: the all-affected principle, the all-subjected principle, and the relational egalitarian principle. When it comes to the all-affected principle and the all-subjected principle, we argue that there is reason to grant most senior citizens a lower voting weight than most non-senior citizens in most decisions. Whether that is the case on the relational egalitarian principle depends on how people relate to each other in society. Indeed, it is sometimes in accordance with the relational egalitarian view to grant senior citizens a greater voting weight than non-senior citizens. (shrink)

The question how offline media use is related to online media use has been heavily debated in the last decades. If they are functionally equivalent, then advantages like low costs, rapid publication cycles, and easy access to online news could lead to them displacing offline news. Data from a large-scale survey with detailed questions about media use in the Netherlands show that, interestingly, the functions that online and offline media are used for are often the same: Those who use online (...) media to gain a broad overview of the news, for fast updates, or for background information use offline media for the same purpose. There are some differences, though: For many citizens, the need of a broad overview of the news seems to be fulfilled by repertoires consisting of several outlets of different types, while they seem to have favorite specific outlets for news updates or background information, respectively. This suggests that outlets can especially focus on the latter two functions to distinguish themselves. (shrink)

As per the teachings of Islam, social trust involves placing others as the pillars of the Islamic countries, which needs to be maintained. Therefore, any promise or action that undermines the social trust of the people as a social capital is one of the most important anti-social factors that must be dealt with. In view of that, Islam is struggling against hypocrisy as an antisocial trend, because it damages social trust when a hypocrite preaches one thing and does another; in (...) other words, the deeds do not confirm the words. That is why citizens cannot believe and trust in their promises, because such individuals do not fulfil them at any time. In this context, officials are suggested to respect the principle of transparency in the governance of Islamic societies in order to improve citizens’ social trust. Therefore, the present study aimed to investigate the role of transparent governance based on the teachings of Nahj al-Balagha in creating social trust among 428 Iranian Muslim citizens in 2022. In sum, the results indicated that transparent governance has a significant positive effect on citizens’ social trust in the officials of Islamic societies, as calculated by structural equation modelling in Linear Structural Relations (LISREL) (path coefficient = 0.58; t -value = 5.54). Contribution: This study provided a new insight into the role of transparent governance in creating and strengthening social trust among the officials and citizens of Islamic societies, which deserves further attention by governments and researchers. (shrink)

This chapter is an investigation of the morality of medical deportation, the practice of returning undocumented migrants, despite their ill health and/or injuries, to their countries of origin. In Sect. 16.1, I look more closely at the nature of medical deportation. In Sect. 16.2, I argue that understanding the morality of medical deportation requires nonideal theory. In Sect. 16.3, I outline contractualism as a nonideal theory. In Sect. 16.4, I apply contractualism to medical deportation and make the case that, first, (...) there are in principle some cases in which medical deportation is morally permissible but, second, the standards that must be met in cases of morally permissible medical deportation are very high. In Sect. 16.5, I consider stakeholders other than the patient and the medical care facility and examine the ways in which effects on them might render medical deportation morally impermissible. I conclude that real-world cases of morally permissible medical deportation are rare at best, and there is little prospect of this situation changing. (shrink)

Is it possible to advance democracy by empowering ordinary citizens to make key decisions about the design of political institutions and policies? In 2004, the government of British Columbia embarked on a bold democratic experiment: it created an assembly of 160 near-randomly selected citizens to assess and redesign the province's electoral system. The British Columbia Citizens' Assembly represents the first time a citizen body has had the power to reform fundamental political institutions. It was an innovative gamble that has (...) been replicated elsewhere in Canada and in the Netherlands, and is gaining increasing attention in Europe as a democratic alternative for constitution-making and constitutional reform. In the USA, advocates view citizens' assemblies as a means for reforming referendum processes. This book investigates the citizens' assembly in British Columbia to test and refine key propositions of democratic theory and practice. (shrink)

Both general publics and elites have long used labels of left and right as cues for political communication and vote choice in Western democracies. This study examines the utility of these spatial semantics as means of encapsulating major political cleavages in East Asian democracies. Through analysis of public opinion surveys, we investigate the influence of organizational affiliation; views on socio-economic, religious, and issues, as well as attitudes toward the political system, as anchors of public understanding of the leftWestern leftright scale (...) in South Korea, the Philippines, and Taiwan, left level of ideological conceptualization are likely related to party system development and democratic experience. (shrink)

This paper sheds new light on Putnam's hypothesis that watching television, particularly entertainment programs, contributes to an erosion of social trust. Previous studies have been unable to reach convincing evidence regarding this claim. It is argued that this is a consequence of the neglect of indirect, interpersonally mediated TV effects which supplement the influence of direct exposure, and extend even to those who do not watch television. Using data from the 2002 and 2004 waves of the European Social Survey in (...) combination with aggregate data from telemetric audience research, we conduct a multilevel analysis of TV's impact on social trust. Investigating this macro-micro relationship, we find that patterns of general TV use in 25 European societies exert substantial effects on individual social trust that by far exceed those of individual TV use. In line with Putnam's hypothesis, there is a negative impact of total TV time; however, high market shares of public TV increase social trust. (shrink)

Deliberative processes provide an important alternative input to environmental politics as they may, in contrast to often used market simulations, provide an arena for 1) discussion of lay participants' values, 2) articulating arguments grounded in other values than consequentialistic, and 3) capturing weakly comparable values. A case study of a Citizens' Jury (CJ) on genetically modified plants was used to investigate how the framing of the process affected the attitude formation among the citizens. The formal set up of this specific (...) CJ made value discussions less relevant. While it opened for value plurality, it failed to facilitate the articulation of weakly comparable values. (shrink)

Discourses of public education reform, like that exemplified within the Queensland Government's future vision document, Queensland State Education‐2010 , position schooling as a panacea to pervasive social instability and a means to achieve a new consensus. However, in unravelling the many conflicting statements that conjoin to form education policy and inform related literature , it becomes clear that education reform discourse is polyvalent . Alongside visionary statements that speak of public education as a vehicle for social justice are the visionary (...) or those reflecting neoliberal individualism and a conservative politics. In this paper, it is argued that the latter coagulate to form strategic discursive practices which work to secure dominant relations of power. Further, discussion of the characteristics needed by the ‘ideal’ future citizen of Queensland reflect efforts to ‘tame change through the making of the child’ . The casualties of this vision and the refusal to investigate the pathologies of ‘traditional’ schooling are the children who, for whatever reason, do not conform to the norm of the desired school child as an ‘ideal’ citizen‐in‐the‐making and who become relegated to alternative educational settings. (shrink)

The individual right of access to one’s own data is a crucial privacy protection long recognized in U.S. federal privacy laws. Mobile health devices and research software used in citizen science often fall outside the HIPAA Privacy Rule, leaving participants without HIPAA’s right of access to one’s own data. Absent state laws requiring access, the law of contract, as reflected in end-user agreements and terms of service, governs individuals’ ability to find out how much data is being stored and (...) how it might be shared with third parties. Efforts to address this problem by establishing norms of individual access to data from mobile health research unfortunately can run afoul of the FDA’s investigational device exemption requirements. (shrink)

Background The prioritization protocols for accessing adult critical care in the extreme pandemic context contain tiebreaker criteria to facilitate decision-making in the allocation of resources between patients with a similar survival prognosis. Besides being controversial, little is known about the public acceptability of these tiebreakers. In order to better understand the public opinion, Quebec and Ontario’s protocols were presented to the public in a democratic deliberation during the summer of 2022. Objectives (1) To explore the perspectives of Quebec and Ontario (...) citizens regarding tiebreakers, identifying the most acceptable ones and their underlying values. (2) To analyze these results considering other public consultations held during the pandemic on these criteria. Methods This was an exploratory qualitative study. The design involved an online democratic deliberation that took place over two days, simultaneously in Quebec and Ontario. Public participants were selected from a community sample which excluded healthcare workers. Participants were first presented the essential components of prioritization protocols and their related issues (training session day 1). They subsequently deliberated on the acceptability of these criteria (deliberation session day 2). The deliberation was then subject to thematic analysis. Results A total of 47 participants from the provinces of Quebec (n = 20) and Ontario (n = 27) took part in the online deliberation. A diverse audience participated excluding members of the healthcare workforce. Four themes were identified: (1) Priority to young patients - the life cycle - a preferred tiebreaker; (2) Randomization - a tiebreaker of last resort; (3) Multiplier effect of most exposed healthcare workers - a median acceptability tiebreaker, and (4) Social value – a less acceptable tiebreaker. Conclusion Life cycle was the preferred tiebreaker as this criterion respects intergenerational equity, which was considered relevant when allocating scarce resources to adult patients in a context of extreme pandemic. Priority to young patients is in line with other consultations conducted around the world. Additional studies are needed to further investigate the public acceptability of tiebreaker criteria. (shrink)

This paper investigates how Food Security is enacted in a southern region of Italy, characterized by high rates of mafias-related activity, arguing for the inclusion in the research of socio-cultural features and power relationships to explain how Alternative Food Networks can facilitate individual empowerment and community resilience. In fact, while FS entails legality and social justice, AFNs are intended as ‘instrumental value’ to reach the ‘terminal value’ of FS within an urban community in Sicily, as well as the space where (...) citizens can act their individual and collective political food choices. Building on the social psychology literature and on ecologic-psychopolitical models :214–231, 2008), we discuss the case of Addiopizzo, a citizen project promoting the legality of their AFNs through the rejection of the payment of the pizzo in the local food chain. The aim is to problematize the extent to which FS is able to re-localize ‘legal’ food in the market. This was done by reconnecting citizens to their space and territory in a socio-cultural context at risk where agro-food producers, retailers and consumers are not free to fully enact their citizenship agency because of a widespread illegal structure. The research findings show that Addiopizzo project enables citizens to act their social power: agro-food producers and retailers by subscribing to formal requirements based on values that reject racket; consumers by purchasing Addiopizzo labelled products; individuals and groups by participating further open-to-the-public activities that promote everyday politically oriented behaviour. The citizen empowerment and community resilience can be exerted within AFNs as they are interconnected paths of reflexivity and social learning within social adaptation. The paper concludes by advocating the role of urban communities as a pivotal agent to maintain positive social adaptations, where AFNs work as a socio-cultural synthesis of traditional and alternative producer–consumer ways of interaction, which are embodied in the FS value. (shrink)

Discourses of public education reform, like that exemplified within the Queensland Government's future vision document, Queensland State Education‐2010 (QSE‐2010), position schooling as a panacea to pervasive social instability and a means to achieve a new consensus. However, in unravelling the many conflicting statements that conjoin to form education policy and inform related literature ( ), it becomes clear that education reform discourse is polyvalent ( ). Alongside visionary statements that speak of public education as a vehicle for social justice are (...) the (re)visionary or those reflecting neoliberal individualism and a conservative politics. In this paper, it is argued that the latter coagulate to form strategic discursive practices which work to (re)secure dominant relations of power. Further, discussion of the characteristics needed by the ‘ideal’ future citizen of Queensland reflect efforts to ‘tame change through the making of the child’ (, p. 201). The casualties of this (re)vision and the refusal to investigate the pathologies of ‘traditional’ schooling are the children who, for whatever reason, do not conform to the norm of the desired school child as an ‘ideal’ citizen‐in‐the‐making and who become relegated to alternative educational settings. (shrink)

This study draws upon the behavioral agency model and the concept of socioemotional wealth to investigate how family firms’ employee pension underfunding decisions differ from those of non-family firms. We explore how these differences are influenced by financial distress, generational stage, and whether the firm is eponymous. We test our hypotheses using data from 452 US firms over an eleven-year period. Our results suggest that family firms are less likely to underfund pensions, but this effect is attenuated in later generational (...) ownership stages and in non-eponymous firms. (shrink)

Norway’s liberal abortion law allows for abortion on social indications, yet access to screening for fetal abnormalities is restricted. Norwegian regulation of, and public discourse about prenatal screening and diagnosis has been exceptional. In this study, we wanted to investigate whether the exceptional regulation is mirrored in public attitudes. An electronic questionnaire with 11 propositions about prenatal screening and diagnosis was completed by 1617 Norwegian adults (response rate 8.5%). A majority of respondents supports increased access to prenatal screening with ultrasound (...) (60%) and/or full genome sequencing of fetal DNA (55%) available for all pregnant women. Significant minorities indicate, however, that a public offer of prenatal screening for all pregnant women would signal that people with Down syndrome are unwanted (46%) or could be criticized for contributing to a ‘sorting society’ (48%). Results indicate deeper ambivalences and a cultural sensitivity to the ethical challenges of prenatal screening and subsequent abortions. The specific diagnosis of Down syndrome and the fear of becoming a ‘sorting society’ which sorts human life due to diagnoses, appear to play prominent roles in citizen deliberations. The low response rate means that a non-response bias cannot be excluded, yet reasons why results are still likely to be of value are discussed. (shrink)

The aim of this paper is to provide some insights for a normative theory of corporate political activities. Such a theory aims to provide theoretical tools to investigate the legitimacy of corporate political involvement and allows us to determine which political activities and relations with government regulators are appropriate or inappropriate, permissible or impermissible, obligatory or forbidden for corporations. After having explored what I call the “normative presumption of legitimacy” of CPAs, this paper identifies three different plausible strategies to criticize (...) and object to corporate political involvement: the “egalitarian” strategy, the “corporate citizenship” strategy, and the “market failures” strategy. It constitutes an attempt to develop the market failures approach to reflect on CPAs. My main claim is that within such an account, the idea that corporations have a license to operate considerably limits their right to engage in political activities. (shrink)

Conceptual analysis has fallen out of favor in political philosophy. The influence of figures like John Rawls and Ronald Dworkin has led political philosophy to focus on questions about what should be done, and to ignore questions about the usage of words. As a result, contemporary political philosophy lacks a shared understanding of the concept of justice, and a considerable amount of disagreement between political philosophers is, upon reflection, traceable to this. In my book, I call for renewed attention to (...) the manner in which the word ‘justice’ is and should be used. Focusing on the late work of G.A. Cohen, I argue that two major debates in contemporary political philosophy: the debate over luck-egalitarianism and the debate over whether justice imposes demands on citizens’ personal lives; are really just conceptual. Whereas some philosophers have been using the term ‘justice’ to refer to one among a plurality of values, others have been using it to refer to institutional rightness. Though the latter use of ‘justice’ is presently more dominant, I argue that much is to be gained from thinking of justice as one value among many. Doing so sheds light on the nature of both democracy and legitimacy, and, paradoxically, makes better sense of the idea that justice is ‘the first virtue of institutions’. (shrink)

This guide accompanies the following article(s): ‘Full Disclosure of the “Raw Data” of Research on Humans: Citizens’ Rights, Product Manufacturer’s Obligations and the Quality of the Scientific Database.’Philosophy Compass 6/2 (2011): 90–99. doi: 10.1111/j.1747‐9991.2010.00376.x Author’s Introduction Securing consent (and informed consent) from patients and research study participants is a key concern in patient care and research on humans. Yet, the legal doctrines of consent and informed consent differ in their applications. In patient care, the judicial doctrines of consent and informed (...) consent are disclosure doctrines based on the obligation of physicians to inform their patients of the following types of information: the nature of the procedure the physician is recommending in the patent’s care (P), the alternatives to the physician‐recommendation (A), and the risks of procedure and its alternatives (R). In addition, the physician must provide truthful answers to the patient’s questions (Q) to the best of the physician’s abilities. In research on humans, the onus of disclosure by study sponsors and principal investigators is much greater than in patient care precisely because the purpose of research is not patient care. The purpose of research is the identification and development of new generalizable knowledge. Thus, participation in a research study or trial may not benefit the study volunteer at all. In addition, the participant may carry a heavy risk burden in relationship to any testing of a newly designed drug or device as part of their experiences in the research study. Presently, despite the risks borne by the research study participant, the raw data collected from volunteers in research trials are treated by courts as if they were the private property of the study sponsor rather than generally owed to the public as would be expected by an effort like research participation aimed at contributing to the development of generalizable knowledge. This paper reviews the obligations that study sponsors owe to their study participants based on the very definition of research as a systematic activity whose purpose is to develop generalizable knowledge to help all humans. Author Recommends Court cases Canterbury v. Spence, United States Court of Appeals, District of Columbia Circuit 464 F.2d 772 (1972). (Federal appellate decision heard in the District of Columbia, USA) Reibl v. Hughes, 2 S.C.R. 880 (1980). (Supreme Court of Canada) Rogers v. Whitaker, 175 C.L. R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Canterbury v. Spence is the landmark Federal informed consent case in the United States heard in the District of Columbia. In this case, Judge Spottswood Robinson articulated the reasonable person standard of informed consent. This standard was subsequently adopted by the Supreme Court of Canada (Reibl v. Hughes, 2 S.C.R. 880 (1980)) and the High Court of Australia (Rogers v. Whitaker, 175 C.L. R. 479 (1992)). The House of Lords rejected the reasonable person standard in England in Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985). Book Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. This book is a detailed guide for the review of scientific and ethical aspects of research on humans contained in the research study protocols and research informed consent forms which need to be submitted by study sponsors and principal investigators to institutional review boards (IRBs) for IRB review before a research study can receive approval to be conducted within a human study population in those institutions over which the IRB has authority. It also presents basic definitions in the area of research on humans and basic approaches to help conduct a deep review of the underlying scientific and ethical issues that are present within a research study protocol and its accompanying research informed consent form. Report National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). This U.S. National Commission in the Belmont Report argued for the necessity of a reasonable volunteer standard in research on humans in the United States. Arguing that the professional standard and the reasonable person standard of consent and informed consent were insufficient to base a disclosure standard in research on humans, this National Commission developed the reasonable volunteer standard where a study participant is to be approached in research informed consent with that information that a reasonable volunteer would want to know. Online Materials Belmont Report: Syllabus Topics for Lecture and Discussion Week I: Introduction and Overview Readings: Rogers v. Whitaker, 175 C.L.R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week II: The Different Standards of Consent and Informed Consent Readings: Canterbury v. Spence, 464 F.2d 772 (1972). (Federal appellate opinion heard in the District of Columbia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week III: Definition of Research Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 2 and 3) Week IV: How to Review a Research Study Protocol and Research Informed Consent Form Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 4–6, 10, and 12–14) Week V: Obligations in Research of Humans Versus Patient Care Reading: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). Focus Questions • How do the judicial doctrines of consent in England and Australia compare to the judicial doctrines of informed consent in the United States and Canada? • How does a professional standard of disclosure differ from a reasonable person standard of disclosure? • What is the definition of research? • How is a research study (study proposal and research informed consent form) reviewed from scientific and ethical bases for considerations of approval by an IRB? • How do the obligations of a study sponsor, a principal investigator, and a research team conducting a research trial on human study participants differ from the obligations of a physician caring for a patient? • Should all raw data of research derived from humans be made available to the public for use in developing generalizable knowledge to help others, or should raw data be considered the private property of the study sponsors (for example, prescription drug manufacturers), who fund the research trials? Seminar/project Idea Draw a timeline of the development of the basic concepts of consent and informed consent in patient care and in patient research. On this timeline, first place the dates of the key court cases in England, the United States, Canada, and Australia on consent and informed consent. Then place the date of the development of the Belmont Report. Why do differences exist between these four countries in terms of the legal requirements of informedness of a patient (in medical care) and a study participant (in medical research)? What roles if any do the concepts of self‐determination and self‐decision have in consent and informed consent in patient care and in informed consent in research on humans among the four countries of interest? What are the realities of research on human participants that require a new standard of informed consent, the reasonable volunteer standard, to be developed beyond the two standards in patient care, the professional standard, and the reasonable person standard? Counterpoint Arguments The following are counterpoint arguments that need to be appreciated to more fully understand the concepts that impact the thesis that ‘raw data’ should be open to the public to allow the opportunity of checking of the results of its associated scientific paper and for further analysis. De‐Identified (Anonymized) Raw Data A current approach to identifying (anonymizinig) raw data is based on the Health Insurance Portability and Accountability Act (HIPAA) of 1996 (P.L.104‐191). HIPAA was enacted by the U.S. Congress in 1996 to keep a person’s medical information private. In a research study, a person’s private medical information can become research data. HIPAA’s Privacy Rule allows a covered entity to de‐identify data by removing all 18 elements that could be used to identify the individual or the individual’s relatives, employers, or household members; these elements are enumerated in the Privacy Rule. The covered entity must also have no actual knowledge that the remaining information could be used alone or in combination with other information to identify the individual who is the subject of the information. Under this method, the identifiers that must be removed are the following: 1 Names. 2 All geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP Code, and their equivalent geographical codes, except for the initial three digits of a ZIP Code if, according to the current publicly available data from the Bureau of the Census: 2a. The geographic unit formed by combining all ZIP Codes with the same three initial digits contains more than 20,000 people. 2b. The initial three digits of a ZIP Code for all such geographic units containing 20,000 or fewer people are changed to 000. 3 All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, and date of death, and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older. 4 Telephone numbers. 5 Facsimile numbers. 6 Electronic mail addresses. 7 Social security numbers. 8 Medical record numbers. 9 Health plan beneficiary numbers. 10 Account numbers. 11 Certificate/license numbers. 12 Vehicle identifiers and serial numbers, including license plate numbers. 13 Device identifiers and serial numbers. 14 Web universal resource locators (URLs). 15 Internet protocol (IP) address numbers. 16 Biometric identifiers, including fingerprints and voiceprints. 17 Full‐face photographic images and any comparable images. 18 Any other unique identifying number, characteristic, or code, unless otherwise permitted by the Privacy Rule for re‐identification. Even though ‘raw data’ can be de‐identified (anonymized) so that there is no way to trace back the data to the study participant from which it was drawn, there are still questions whether the ‘de‐identified raw data’ can be given to other researchers or made public without the original study participant’s approval. It may be the case that this approval could be done at the start of any research study where the individual considering study participation would be counseled on what the process of de‐identification consists of and would be asked whether the participant would allow use of the data by other researchers or made available to the public in a de‐identified state. However, there may be questions of the study participants as to whether the data are truly de‐identified and untraceable back to the study participant since the participant would not be able to see the process actually being carried out in detail in all relevant circumstances. Using Raw Data in Context Simply being in possession of raw data is never enough to build on that data from a research perspective. Researchers need to understand the context of the scientific research study in which the data were collected. This research context includes (but is not limited to): (i) the scientific hypothesis of the research study, (ii) the inclusion and exclusion criteria selected by the research designers of the study to determine which study participants were included and which were excluded from the study, (iii) the methods used to collect the data and possibilities of errors in the data collection processes, and (iv) answers to questions regarding whether any data were excluded from the study data and why these data were excluded. Ownership Rights Over Data There are ownership rights over data. Ownership rights include court decision making related to the question which parties are to be considered as the owners of the data. Possible owners here include (but are not limited to) (i) the study sponsor whose only role was to fund that study, (ii) the principal investigator(s) who developed the scientific hypothesis, and (iii) individual study participants through special contracts made by individual participants who negotiate such contracts with study sponsors and principal investigators to share in the ownership of data. Examples of such data are participant sources of unique gene lines or unique cell lines to be used in future research. Objections to Data Sharing Finally, individual researchers may simply object to sharing data. A researcher’s arguments here may be simply stating that he or she has a right to fully analyze the data since the collection of the data was the researchers’ idea in the first place. These researchers may argue that they have the right to mine the data as fully as they can before deciding to make the data open to the public for others to analyze. Works Cited 1 Kaiser, J. ‘Making Clinical Data Widely Available.’Science 322.5899 (10 Oct. 2008): 217–8. 2 de Lusignan, S., J.F. Metsemakers, P. Houwink, V. Gunnarsdottir, and J. van der Lei. ‘Routinely Collected General Practice Data: Goldmines for Research? A Report of the European Federation for Medical Informatics Primary Care Informatics Working Group (EFMI PCIWG) from MIE2006, Maastricht, The Netherlands.’Informatics in Primary Care 14.3 (2006): 203–9. 3 Sim, I. ‘Human Studies Database Project’, CTSA Data Repositories Symposium (17 Oct. 2008). 23 Nov. 2010. 4 Sim, I., C.G. Chute, H. Lehmann, R. Nagarajan, M. Nahm, and R.H. Scheuermann. ‘Keeping Raw Data in Context.’Science 323.5915 (6 Feb. 2009): 713. 5 U.S. Department of Health and Human Services, National Institutes of Health, HIPAA Privacy Rule, Information for Researchers. 13 Nov. 2010. 6 Wilczynski, N.L., R.B. Haynes, and Hedges Team. ‘EMBASE Search Strategies for Identifying Methodologically Sound Diagnostic Studies for Use by Clinicians and Researchers.’BMC Medicine 29.3 (March 2005): 7. (shrink)

This guide accompanies the following article(s): ‘Full Disclosure of the “Raw Data” of Research on Humans: Citizens’ Rights, Product Manufacturer’s Obligations and the Quality of the Scientific Database.’Philosophy Compass 6/2 (2011): 90–99. doi: 10.1111/j.1747‐9991.2010.00376.x Author’s Introduction Securing consent (and informed consent) from patients and research study participants is a key concern in patient care and research on humans. Yet, the legal doctrines of consent and informed consent differ in their applications. In patient care, the judicial doctrines of consent and informed (...) consent are disclosure doctrines based on the obligation of physicians to inform their patients of the following types of information: the nature of the procedure the physician is recommending in the patent’s care (P), the alternatives to the physician‐recommendation (A), and the risks of procedure and its alternatives (R). In addition, the physician must provide truthful answers to the patient’s questions (Q) to the best of the physician’s abilities. In research on humans, the onus of disclosure by study sponsors and principal investigators is much greater than in patient care precisely because the purpose of research is not patient care. The purpose of research is the identification and development of new generalizable knowledge. Thus, participation in a research study or trial may not benefit the study volunteer at all. In addition, the participant may carry a heavy risk burden in relationship to any testing of a newly designed drug or device as part of their experiences in the research study. Presently, despite the risks borne by the research study participant, the raw data collected from volunteers in research trials are treated by courts as if they were the private property of the study sponsor rather than generally owed to the public as would be expected by an effort like research participation aimed at contributing to the development of generalizable knowledge. This paper reviews the obligations that study sponsors owe to their study participants based on the very definition of research as a systematic activity whose purpose is to develop generalizable knowledge to help all humans. Author Recommends Court cases Canterbury v. Spence, United States Court of Appeals, District of Columbia Circuit 464 F.2d 772 (1972). (Federal appellate decision heard in the District of Columbia, USA) Reibl v. Hughes, 2 S.C.R. 880 (1980). (Supreme Court of Canada) Rogers v. Whitaker, 175 C.L. R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Canterbury v. Spence is the landmark Federal informed consent case in the United States heard in the District of Columbia. In this case, Judge Spottswood Robinson articulated the reasonable person standard of informed consent. This standard was subsequently adopted by the Supreme Court of Canada (Reibl v. Hughes, 2 S.C.R. 880 (1980)) and the High Court of Australia (Rogers v. Whitaker, 175 C.L. R. 479 (1992)). The House of Lords rejected the reasonable person standard in England in Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985). Book Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. This book is a detailed guide for the review of scientific and ethical aspects of research on humans contained in the research study protocols and research informed consent forms which need to be submitted by study sponsors and principal investigators to institutional review boards (IRBs) for IRB review before a research study can receive approval to be conducted within a human study population in those institutions over which the IRB has authority. It also presents basic definitions in the area of research on humans and basic approaches to help conduct a deep review of the underlying scientific and ethical issues that are present within a research study protocol and its accompanying research informed consent form. Report National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). This U.S. National Commission in the Belmont Report argued for the necessity of a reasonable volunteer standard in research on humans in the United States. Arguing that the professional standard and the reasonable person standard of consent and informed consent were insufficient to base a disclosure standard in research on humans, this National Commission developed the reasonable volunteer standard where a study participant is to be approached in research informed consent with that information that a reasonable volunteer would want to know. Online Materials Belmont Report: Syllabus Topics for Lecture and Discussion Week I: Introduction and Overview Readings: Rogers v. Whitaker, 175 C.L.R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week II: The Different Standards of Consent and Informed Consent Readings: Canterbury v. Spence, 464 F.2d 772 (1972). (Federal appellate opinion heard in the District of Columbia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week III: Definition of Research Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 2 and 3) Week IV: How to Review a Research Study Protocol and Research Informed Consent Form Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 4–6, 10, and 12–14) Week V: Obligations in Research of Humans Versus Patient Care Reading: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). Focus Questions • How do the judicial doctrines of consent in England and Australia compare to the judicial doctrines of informed consent in the United States and Canada? • How does a professional standard of disclosure differ from a reasonable person standard of disclosure? • What is the definition of research? • How is a research study (study proposal and research informed consent form) reviewed from scientific and ethical bases for considerations of approval by an IRB? • How do the obligations of a study sponsor, a principal investigator, and a research team conducting a research trial on human study participants differ from the obligations of a physician caring for a patient? • Should all raw data of research derived from humans be made available to the public for use in developing generalizable knowledge to help others, or should raw data be considered the private property of the study sponsors (for example, prescription drug manufacturers), who fund the research trials? Seminar/project Idea Draw a timeline of the development of the basic concepts of consent and informed consent in patient care and in patient research. On this timeline, first place the dates of the key court cases in England, the United States, Canada, and Australia on consent and informed consent. Then place the date of the development of the Belmont Report. Why do differences exist between these four countries in terms of the legal requirements of informedness of a patient (in medical care) and a study participant (in medical research)? What roles if any do the concepts of self‐determination and self‐decision have in consent and informed consent in patient care and in informed consent in research on humans among the four countries of interest? What are the realities of research on human participants that require a new standard of informed consent, the reasonable volunteer standard, to be developed beyond the two standards in patient care, the professional standard, and the reasonable person standard? Counterpoint Arguments The following are counterpoint arguments that need to be appreciated to more fully understand the concepts that impact the thesis that ‘raw data’ should be open to the public to allow the opportunity of checking of the results of its associated scientific paper and for further analysis. De‐Identified (Anonymized) Raw Data A current approach to identifying (anonymizinig) raw data is based on the Health Insurance Portability and Accountability Act (HIPAA) of 1996 (P.L.104‐191). HIPAA was enacted by the U.S. Congress in 1996 to keep a person’s medical information private. In a research study, a person’s private medical information can become research data. HIPAA’s Privacy Rule allows a covered entity to de‐identify data by removing all 18 elements that could be used to identify the individual or the individual’s relatives, employers, or household members; these elements are enumerated in the Privacy Rule. The covered entity must also have no actual knowledge that the remaining information could be used alone or in combination with other information to identify the individual who is the subject of the information. Under this method, the identifiers that must be removed are the following: 1 Names. 2 All geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP Code, and their equivalent geographical codes, except for the initial three digits of a ZIP Code if, according to the current publicly available data from the Bureau of the Census: 2a. The geographic unit formed by combining all ZIP Codes with the same three initial digits contains more than 20,000 people. 2b. The initial three digits of a ZIP Code for all such geographic units containing 20,000 or fewer people are changed to 000. 3 All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, and date of death, and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older. 4 Telephone numbers. 5 Facsimile numbers. 6 Electronic mail addresses. 7 Social security numbers. 8 Medical record numbers. 9 Health plan beneficiary numbers. 10 Account numbers. 11 Certificate/license numbers. 12 Vehicle identifiers and serial numbers, including license plate numbers. 13 Device identifiers and serial numbers. 14 Web universal resource locators (URLs). 15 Internet protocol (IP) address numbers. 16 Biometric identifiers, including fingerprints and voiceprints. 17 Full‐face photographic images and any comparable images. 18 Any other unique identifying number, characteristic, or code, unless otherwise permitted by the Privacy Rule for re‐identification. Even though ‘raw data’ can be de‐identified (anonymized) so that there is no way to trace back the data to the study participant from which it was drawn, there are still questions whether the ‘de‐identified raw data’ can be given to other researchers or made public without the original study participant’s approval. It may be the case that this approval could be done at the start of any research study where the individual considering study participation would be counseled on what the process of de‐identification consists of and would be asked whether the participant would allow use of the data by other researchers or made available to the public in a de‐identified state. However, there may be questions of the study participants as to whether the data are truly de‐identified and untraceable back to the study participant since the participant would not be able to see the process actually being carried out in detail in all relevant circumstances. Using Raw Data in Context Simply being in possession of raw data is never enough to build on that data from a research perspective. Researchers need to understand the context of the scientific research study in which the data were collected. This research context includes (but is not limited to): (i) the scientific hypothesis of the research study, (ii) the inclusion and exclusion criteria selected by the research designers of the study to determine which study participants were included and which were excluded from the study, (iii) the methods used to collect the data and possibilities of errors in the data collection processes, and (iv) answers to questions regarding whether any data were excluded from the study data and why these data were excluded. Ownership Rights Over Data There are ownership rights over data. Ownership rights include court decision making related to the question which parties are to be considered as the owners of the data. Possible owners here include (but are not limited to) (i) the study sponsor whose only role was to fund that study, (ii) the principal investigator(s) who developed the scientific hypothesis, and (iii) individual study participants through special contracts made by individual participants who negotiate such contracts with study sponsors and principal investigators to share in the ownership of data. Examples of such data are participant sources of unique gene lines or unique cell lines to be used in future research. Objections to Data Sharing Finally, individual researchers may simply object to sharing data. A researcher’s arguments here may be simply stating that he or she has a right to fully analyze the data since the collection of the data was the researchers’ idea in the first place. These researchers may argue that they have the right to mine the data as fully as they can before deciding to make the data open to the public for others to analyze. Works Cited 1 Kaiser, J. ‘Making Clinical Data Widely Available.’Science 322.5899 (10 Oct. 2008): 217–8. 2 de Lusignan, S., J.F. Metsemakers, P. Houwink, V. Gunnarsdottir, and J. van der Lei. ‘Routinely Collected General Practice Data: Goldmines for Research? A Report of the European Federation for Medical Informatics Primary Care Informatics Working Group (EFMI PCIWG) from MIE2006, Maastricht, The Netherlands.’Informatics in Primary Care 14.3 (2006): 203–9. 3 Sim, I. ‘Human Studies Database Project’, CTSA Data Repositories Symposium (17 Oct. 2008). 23 Nov. 2010. 4 Sim, I., C.G. Chute, H. Lehmann, R. Nagarajan, M. Nahm, and R.H. Scheuermann. ‘Keeping Raw Data in Context.’Science 323.5915 (6 Feb. 2009): 713. 5 U.S. Department of Health and Human Services, National Institutes of Health, HIPAA Privacy Rule, Information for Researchers. 13 Nov. 2010. 6 Wilczynski, N.L., R.B. Haynes, and Hedges Team. ‘EMBASE Search Strategies for Identifying Methodologically Sound Diagnostic Studies for Use by Clinicians and Researchers.’BMC Medicine 29.3 (March 2005): 7. (shrink)